The Will To Live.

Juggling much emotional weight lately and my failing body I’ve been contemplating something us patients might be missing. Something we all struggle with, something we all at some point search for, and the only thing that can keep us going despite our life sustaining treatments…the will to live. I don’t exactly know where it’s at or how to find it, and that being the catch makes this post extra tricky.

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First off, life is just tiring and of course I would have a disease that is accompanied with chronic fatigue. Half the time I really didn’t plan on falling asleep, but I laid down next to my cat and before I knew it suddenly it was dark outside. I don’t even realize it, but I am tired all the time. Not only is my body scavenging for any bit of energy it can find, but also oxygen because apparently I’m low on that too. I’m mentally tired y’all, and every last one of us reaches this hurdle. After so much going, and so much doing we can hardly keep up. We don’t want to make the last hurdle, and we don’t want to throw ourselves over it. We are tired. Where, if we are so consumed with exhaustion will we find the will to live? As much as I love to talk, and write not even I can answer this question. I’m not gonna type out some fancy thing that we can put on Pinterest to keep us going because the answer to this plaguing thought is unidentifiable. It’s one of those moving thoughts deep down that only we can uncover, and discover. However, I will say this. Pulmonary Hypertension has taken a lot from me. It took my financial freedom, it took my “future marriage”, it took my dream job, it took my body, it took my dad’s peace of mind, and it sucked all the oxygen out of my decrepit lungs. What did it leave? Anything? It left me. It left my loud mouth, my intense love for things that move me, my all around love for black, the countless kisses I have for Rocco, and my need for love and fun. Pulmonary Hypertension took so much of everything that what it did leave, it left for me to intensify. I’ve intensified my love for people, and my patience for their faults. I love to see them through their times. It intensified my want to have fun because quite frankly I don’t know what could happen to me. It intensified my view on life, and how truly beautiful it can be because I’ve seen death in places where it was not welcome, and how damaging it was. Pulmonary Hypertension intensified me, and within this intensity I’ve found my will to live. Sometimes I lose the fuel to this fire, and over and over it’s a challenge to re-discover it. But every time I do, I feel just how beautiful life can get. I never knew what beautiful felt like until I couldn’t catch my breath. There is beauty in this struggle.

-haley.

Shooting For the Sunrise.

Life has been a slew of weird events strung together in order to keep me happy. For a few months now I’ve merely been existing in an unidentifiable funk, and when people ask whats bugging me, I can’t even fathom what words to respond with. I clearly don’t know. Its been the weirdest time in my life, and keeping my mood afloat and in check has been quite the battle. I guess the only definition I have for myself is lost at the moment. Lost in the ridiculous, and overpowering waves of life that have been washing over my head for a long time now. Finally, I’m now realizing that I’m halfway drowned and far away from shore. Yet, I feel as though I’m exactly where I need to be. Is anyone else going through this?

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At first I tried to look for happiness in all the wrong ways. Happiness to me was drowning out all the bad, and trying to brainwash myself into thinking that if I blocked anything and everything out that rocked me to the core, I would be fine. I would be fine if I kept ignoring the truth, if I put my blinders on and only focused on the “fluff.” Let me tell you right now, the fluff in life is fake. Its nothing but a mirage that in itself is evil because when you do figure out its fake, and that you thought you just might be fine, that fall will hurt worse than anything. The truth is sometimes ugly, but in the ugliest things I find a certain type of simple, and freeing beauty. Does that make sense? Yea I didn’t think so. I thought that by doing everything “perfect” in life I would find total happiness. What could go wrong? I’m going to church, I’m working a full-time job, I have money, I have “friends”, I mean seriously what am I missing? Taking a step back I realized that I was overworked, exhausted, spent more time sleeping than laughing, I was being lied to, I was bored, and I started to hate life. I entered a state of insanity, and forever I’ve been told that I’m just “dramatic”, “weird”, and “out of control” when in reality I was losing my mind. And now as I sit here in my cold room barely lit with my bedside lamp, I have a such an overpowering sense of clarity that has never graced my eyes or mind before. These emotions are awful. My own mind wants to turn against itself, and sometimes the thought of death is more comforting than waking up tomorrow and seeing the Texas sunrise. However, pulling myself out of these massively damaging thoughts, and feeling the relief when I no longer have the weight hanging around my neck is such an amazing sensation. To look back and see what I’ve gone through, what I’ve survived, and how bad things have gotten and continue to get, it’s just amazing. In the darkest bars I still meet the nicest and funniest people. To the most horrible songs, I have so much fun dancing with the weirdest people. In the darkest of times there is that one light and there is still beauty, and you will pull yourself through. Do not block out the bad because deep within the lousiest moments are the unexpected bursts of elated blessings that your protective “blinders” didn’t let you experience. Happiness is still existent, even in the weirdest places. You are your only judge of happiness, and I promise darling you are not too far from shore. You will not sink to the bottom, and complete black will not encompass your soul. Keep pushing to make it to that sunrise.

Life is beautiful. Keep fighting.

Check out the song of the week, Help Yourself by the one and only Amy Winehouse.

-haley.

Oh, Happy Day!

Oh my goodness loves. I am sick, for the first time this year. I really just want to sit at home, and write, but having two jobs doesn’t permit that. Ugh…moving on.

Happy Monday I guess! I’ve never really thought about Martin Luther King Jr. Day even though what he did was beyond amazing. It has always just been one of those days where we got off from school, and I had no idea until half way through it that we were celebrating him. I sound awful I know, but its the truth. I was raised into believing that absolutely no one is different from you, despite their appearance. As a result, I had a wide variety of friends that were different races and what not, and I never thought once about it. I still have a wide variety of friends, and now I even work with kids in which most of them are not white. Being raised with that outlook has made me ten times stronger in associating a bond with them, because I love learning about their cultures, and them in general. I couldn’t imagine living in a time period when that would’ve been shamed. Well, I guess I can.

mlk3Wow, just absolutely wow.

 

Back to the main point. Like I said, Martin Luther King Jr Day just happened to slip by until I saw a post this morning that woke me up. A friend of mine who had extreme trouble getting pregnant (happened to be blessed with her first boy), but could not get pregnant again decided to adopt. She ended up with a beautiful baby girl who just happens to be half black (I think), and she is the cutest thing ever. She is absolutely wonderful, and this multiracial family is just fantastic. With Pulmonary Hypertension, I too one day might be looking at adoption. I too might have a multiracial family, and I will in fact be proud of that. I absolutely love the kids I work with everyday who are different races. No, they are not mine, and if I can love them that much I think I am suited for adoption. Bottom line, I just wanted to say how thankful I am for MLK Jr. because I get to work with these amazing kids. I get to actually talk to them, and love on them, and it’s not a crime. Also, my family one day just might be complete. I am so incredibly thankful.

Also, just a little fun fact. The cover photo on this blog (and where even more pictures were shot in a Fashion Post) just happens to be at an abandoned school in my hometown. This school was shut down in 1972 because it was a predominately “Black” school, and finally integration started to take place making this educational facility not needed anymore I guess. I absolutely love it, it’s a wonderful part of hometown history, its creepy, and it made for an awesome photo shoot. Enjoy the song of the week, Dearest by Buddy Holly. Happy MLK Jr. Day y’all!

stephanieMy friend, Stephanie, in front of Summit. Beautiful building. You can check out my photo shoot pictures around Summit in “Fat Ankle Fashion: Boot Season!”

-haley.

Fashion Friday: Feel Good.

Oh, finally. I have not forgotten, in fact this is a daily subject in my life. Also, a passionate subject. FASHION FRIDAY!!!!

So, usually I’m giving tips on how to cover up some medical PH mishaps (fat ankles, red blotching, tubes, oxygen, cold) due to medication that we take, but lets not forget about the MENTAL side to our disease. We can cover our bodies however we need to, but we also need clothes to make us feel good. When I think about amazing fashion that makes us feel good only one person immediately comes to mind. betseyBETSEY JOHNSON.

Of course its Betsey. Of course. If you have no clue who I’m talking about, lets sum it up to the queen of pink, fun, and staying true to yourself. Betsey is a designer that started in the 60’s (Alley Cat by Betsey). She had a great, and extravagant taste that didn’t stop her! She stayed true to her crazy fun self, and pushed through. Now she’s an extremely successful and well-known designer. She’s famous for doing a cart-wheel at the end of her runway shows, and these aren’t the boring runway shows either. The models are laughing, playing around, blowing kisses, and all of this is encouraged by Betsey. Her clothes, shoes, perfumes, sunglasses, socks, purses, and even cards and stationary sets are a hit! You can find her at Macy’s, Dillards, Nordstrom, and Michael’s for your cards and pens! She’s fabulous.

betseycollage

Moving on, her personality is just contagious. Never has she once acted like she cared which is so refreshing. She’s truthful to the core, and everyone needs a “Betsey” in their life. In fact, the world needs a whole lot more of Betsey! Many times I’ve used her leopard fuzzy socks to wear into surgery because not only are they warm, but fabulous. So, if you are looking to add a little spice to your life in fashion, or anything of the sort, think Betsey! Just looking at her products will make anyone smile. Fashion Icon at its finest. Thank you Betsey for being you! Happy Friday Loves. Take care of every part of you!

Processed with VSCOcam with x1 presetRocking my new Betsey Blues.

photo(125)Betsey “Raven” Sunglasses right before my first specialist appointment.

photo(124)Betsey shirt!

-haley.

Want to see more of Haley’s daily life, and fashion? Follow her on Instagram! @haleyann92

I’m Not Sorry.

I get tattoos. I love showing what inspires me, and what has heavily influenced me even on my body.
I love art because things that are created come from within, and are so beautiful they can’t be described correctly.
I love black cats, especially Rocco. I don’t think they’re bad luck, I think they’re just as beautiful as any other cat if not more. I don’t believe in animal, or human discrimination.
I quit school. Not necessarily because I hate it, but I already have medical bill collectors harassing my phones, and I don’t need anymore debt.
I believe in loud lipstick. Life is short, wear the hot pink lips.
I like vodka. After you apply the lipstick, have some fun, responsibly of course.
I love giant high heels. Life’s short, doesn’t mean your legs have to be.
I love 50’s early 60’s music. It’s incredibly fun to dance to, especially when you’re making breakfast.
I start every morning by watching I Dream of Jeannie. I think the light-hearted comedy is perfect to wake up to, and that doesn’t make me weird.
I’m either utterly obsessed with something, or not interested at all. That does in fact make me weird.
I believe in being realistic, and then God will take over when he needs to. I believe children deserve the absolute best.
I guess I’m really passionate about conserving the past, history, art, and the way things were done. I love history. I believe that if anything sparks my interest to become completely, and utterly educated on it. I love meeting new people, and talking to complete strangers. The weirdest people can be the coolest, and friendliest people. I believe that in a way I was born to raise hell, and get people’s attention. I’ve never been one to follow rules, conform, or stay quiet. It can be unfortunate sometimes, but it’s my life. These things are me, and honestly I’m just tired of apologizing for who I am. I am not sorry, not anymore.

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Briley Dockery Photography

-haley.

I’m Still Surviving.

I’ve become one of those people who follows “survivor” accounts, quotes, and what not to stay updated on all that cool lingo. However, with Pulmonary Hypertension, we are on life-sustaining treatment which I guess in a way means we are constantly surviving. I have trouble calling myself a “survivor” because I’m not quite done yet.

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It may seem like a negative outlook to many, but a lot of us still have this same view whether we realize it or not. PH is still barely caught in the doctor’s office being its usual invisible self. Even after diagnosis, there is still no cure available. Treatment is built around the idea of making it to the end of the day, and not falling apart. People love to say that “we are survivors” yet I really want to say “of today. We WILL be survivors.” Now that sounds better. I’m totally guilty of the survivor talk too though. It’s not a bad thing at all, but it’s highly unfortunate, and can be changed.

Lets rewind for a minute. Someone asked me someday how long I’ll blog until I completely focus on school (which I finally quit.) Three years ago, I would’ve buried my head in my schooling, and opted for the more stable job. However, I’ve began to step back, and analyze things more closely. This blog is my life, and what I want to DO with my life. My writing, my goals, and my PH community are what keep me going, and I’m not stopping. I’m aiming for lights. And overall, this all ties back into calling ourselves Survivors. If it wasn’t for not having a cure, for suffering through treatment, and mental trials, I would have nothing to write about. This keeps me going so one day we can call ourselves Survivors rather than Surviving. All of this will get out there one day, spark interests, get attention, get people thinking, money donated, and hopefully curing Pulmonary Hypertension. We will Survive, and we will be a Survivor one day saying that we went through our time “surviving” with a treatment, and became a Survivor with a cure. The catch? I need your help getting there. You know what to do y’all. I’m glad y’all are my community of supporters. You are the absolute best.
Check out the song this week, I.G.Y by Steely Dan. “What a beautiful world it will be, What a glorious time to be free.” Check it out y’all.
-haley.

My Immunity Routine.

I’ve been getting a lot of questions asking how I’ve stayed so healthy this season. Usually I’m posting about how sick I am at the moment, but throughout the digging around on this blog this year, you wont see much of that. With a compromised immune system, usually people like us are the first to get sick, and the last to get well. It’s important to stabilize our immunity if possible, but how?

First off, I did not get the flu shot, nor do I believe in getting the flu shot. The last time I let them inject that into my body I wound up incredibly sick, and stayed that way through January. This year when they offered, I refused. In return? I haven’t been actually sick once. Sometimes my throat might be sore, or maybe a runny nose that doesn’t last more than a day, but hey. How do I do it? Here is my Immunity Routine.

Step one. Coffee. Always Coffee.

morningroutine

Step Two. I take Vitamin D3 for Immunity (and supposedly bone health), B12 because I feel fat, Vitamin C for Immunity, and my prescribed Thyroid pill for my hypothyroidism. All can be found at a local store.

morningroutine2

I take one of each except for D3, I take literally three. Why? Because you can take up to five a day, and I guess the more the healthier.

morningroutine3

This has been working great for me since July. The only way I plan to enhance it is to add Biotin to it for my hair, and nails. So my loves, I encourage you to step away from the awful flu shot, and take it into your own hands when it comes to maintaining your health. You can do it, the easy way!

-haley.

Mammal Monday.

I know that title just had to throw y’all off right? Well, this blog is definitely centered on Pulmonary Hypertension, and the life surrounding it, but also it will contain things that move me. No matter what that might be. Like many Americans, I was one of the viewers that the film “Blackfish” happened to piss off. In case you haven’t seen it, you need to because my poorly typed up blog post cannot go into such a highly intelligent beautiful disaster that this film encompasses when it comes to the Orca. I am newly obsessed with how beautiful, smart, emotional, and fascinating they are. Lets back up a little bit.

orca

Since I can remember, I have been deeply afraid of water. Not just the deep blue liquid, but what can lie beneath it has always scared me as a child. I never liked being in a pool alone, the deep end, a dark pool, or the ocean. Even as an adult, I cannot possibly think of even getting in a pool at night because my mind will in fact play tricks on me. I just know that Jaws will emerge from the filter, grab my feet, and pull me under to a watery death. Also, I’ve had a recurring dream since I was a child that even to this day my sister can remember me talking about. I’ve always had a dream that I lived in a house with my family (me as the mom and adult in this family), and that we had a pool, and outside in my pool I had a pet Orca. I was terrified of the thing, but still got in the water, and swam with it. Also, I had the coolest “Scuba Diver Barbie” with her Orca that I always played with. She was the coolest y’all. Hey, don’t ask me.

barbie2Found a picture online! See, she was the coolest ever. Dear Mom, I want this toy again.

Moving on, I’ve never really studied Orca’s, or had anything to do with them. They are an ocean creature, so yea, no thanks. However, I’m totally the person that is always doing research, and I absolutely love documentaries. So, when Blackfish graced my screen I was highly curious. I watched a documentary before Blackfish that was just about Orca’s and their lifestyle. I was told how long they lived (a human lifespan), how much they loved and stayed with their families, and how they love people…in the wild. Then I watched Blackfish where all those facts still rang true, but at Seaworld these Orca’s are just different. So many attacks on humans, living to be only thirty years old (Seaworld staff lying on camera also about that), Orca’s being separated from their families and attacking each other, and even footage of them being captured in the wild. Dont fool yourself, these whales were never rescued. Also, trainer lives being taken because of these animals’ cries for help? I remember my senior year hearing about Dawn Brancheau’s death, and I accurately remember the news reporter blaming it on her and her ponytail instead of Seaworld and their captivity.

seaworld

I am a huge animal lover, and yes I eat meat. I’m sorry, I love my Whataburger. However, I, myself, will not take an animal life. I will not shoot it, torture it, or whatever else. I just couldn’t live with myself. I understand the sadness yet necessity of killing a cow for meat. Its sad, but I do understand that part of the circle of life. But what part of keeping a twelve thousand pound whale in a tank for family entertainment sounds like necessity? It doesn’t. It’s not family entertainment, its torture with fancy music. I can’t even stand to see it anymore. Yes, they are beautiful, incredible, and mysteriously smart creatures…but they are not yours. They do have souls (I don’t care what people think about that), they do feel, and they are not slaves to your ticket prices. I encourage all my readers to watch Blackfish, and join the “AntiSeaworld” movement with me. Please show love and support to these amazing animals, and Boycott this “amusement” park. I was so happy to hear about all the artists cancelling their performances at Seaworld (Heart included, one of my favorite bands ever!) and Joan Jett sending a letter expressing her opinions as well. You Rock, literally, Joan Jett! Yes, these are beautiful creatures. If you are ever wanting an educational experience about these animals, and are concerned that you would be losing that experience when boycotting Seaworld, then please feel free to take a boat ride out by Seattle to watch them in their natural habitat. Thats what should be happening. I have no desire for my children to ever be taken to Seaworld, and be taught that this is how we should treat animals. With that being said, I know these Trainers that are interacting with these animals love them and do not abuse them. They love looking forward to taking care of them, and making them a part of their life. Captivity in itself is the problem. Please, my readers, do not invest another dime. I feel the need to defend my dream pet Orca, and favorite Barbie Orca. Loves these Animals…from afar.

-haley.

Unfortunate Events.

I finally took my medication last night, and now I’m just a girl with a headache. Hmm, just a headache? Well, that’s how I appear at least. I forgot how much a disease can hurt. After so many months you become numb to the constant feeling of the pain that a disease can bring. Forever, I thought the heart attack like episodes happening daily had to be normal. I was growing immune to them. After my life saving treatment came about, I felt what I thought was normal which in reality was just “better” until the side effects kicked in. When most people see me the day after I take my medication they think I’m probably dramatic or exaggerating. I complain about my head, and what not, and to them it’s just ordinary. The pain this disease brings in every way is anything but ordinary.

pain

Hours after I swallow the pills that supposedly save my life, a series of events overwhelms my body. The ridiculous drop in blood pressure makes getting out of bed, showering, and even standing up a difficult task. My heart just wants to rest because its been fighting its whole life for just a break, and now with this low blood pressure, why not try? Sometimes the action of merely lifting my hands above my head to wash my hair can take my breath away, and make sparkles appear everywhere because my body wants to turn itself off. These pills are professionals in dilating every blood vessel in my body to the point that my blood boils beneath my skin, and rises to the surface in weird areas causing a red-hot uncomfortable rash. Believe me, it’s not cute either. The pills have dilated my blood vessels so much that the ones in my head feel as thought they might explode. Everything tightens making any light, sound, movement, and even food a horrendous experience, and sometimes I cant even open my jaw because that’s the level of pain that my head is enduring. The pills are so exact in making sure that everything is dilated to the point that my body retains fluid, which sinks down into my feet. My legs, ankles, and feet swell as though I’m nine months pregnant, pushing me up two shoe sizes, and cutting my feet open to let them drain becomes a rational thought. That’s how badly they can hurt. Lets not forget the feeling of no longer having control over your body. You feel as though you are regulating your breathing quite well, yet for some reason that indescribable feeling still encroaches upon you. The oxygen is slipping out of your lungs quicker than you can replace it, you lose the feeling of the atmosphere that you are in, and suddenly you feel like you are ten years away from the room you are existing in. Those sparkles? They may be pretty but they are deadly. You don’t know whether this is “just another weird feeling” or if you actually need to go to the hospital. You’ve done this so many times that sitting on death’s doorstep is normal. So, if these pills don’t work for you? Why, you get all this, and a tube put in your chest for a pretty penny as well.

How ironic that this pain is one of the only things letting us know that we are still alive. Sometimes it doesn’t even feel like its worth it anymore, and that the outside world requires too much energy for the time being. At least, that’s how I feel today. So, this is not just another headache. This is a series of unfortunate events.

-haley.

P.S. Negativity, I know. I’m sorry.